Friday, September 23, 2016

I think this kid is about the cutest thing ever! Of course I am partial, but I think most people would agree she's got some looks. I can claim the eyebrows, everything else is daddy. Still wondering when her eyes might turn blue...

So, she looks like such a nice kid here, but in actuality it has been a rough couple of weeks. She has been so irritable, cries at the drop of hat, been pinching herself at home and at school, just plain unhappy. Ugh, I'm about to go crazy. This is not my kid.

I know for sure it's nothing to do with puberty, is it the terrible twos that never happened? Is it typical for a kid to be moody at 10 years old? I don't know what the heck is going on.

We went to see the orthotist Monday to get her feet molded for shoe inserts and that was total hell! I am so glad she didn't kick him, she was a nightmare. He thought that it is due to the change in weather - from 110 degrees to 99? Well, he would know because he deals with these kids all the time so that is what I am going with. I am assuming it's just a matter of time until she gets used to the barometer change, then of course it will get cooler with more barometer changes..

Irritable is the best word I can think of to describe her, however, I once had a good friend tell me that most people use this word wrong. Or maybe it was the word irritated, or aggravated. Either way I am aggravated due to my child's irritability.

If you read this blog you must realize that my grammar and use of apostrophes and commas, etc.. are not my strong suit. AT LEAST I DON'T USE ALL CAPS! or no caps little i's and no punctuation that is the worst

Well, I am hoping it will be a good weekend with Katie and she can go back to her sweet self. I think I've aged a few years these last couple weeks...

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Katie's Story!

Read our story on the ViaCord website - click on the picture above

welcome to my blog!

Our daughter Katie, underwent a cord blood transfusion at Duke Medical Center in early January 2010. It was her own (umbilical) cord blood which we had saved at birth through a company called ViaCord. Not really thinking we would ever have a need for it, we were absolutely THRILLED at the thought that her own cord blood might be able to change her life, and help her to progress faster.

We are very hopeful that this procedure will help Katie to progress faster in overcoming her many physical delays. Mentally she seems to be fine, able to understand, and tries to communicate, but her physical delays hold her back.

What is expected is that the stem cells in the cord blood will repair or replace any damaged cells, or form new connections anywhere in her body that needs it. We were told not to expect much for at least 6 months - that most parents report a jumpstart in therapies at about that time. However, there are those families I have seen on youtube or the news who have incredible results - some even right away, and I can only be hopeful that we will have a similar experience. After all, I am her mom!

I believe that with the help of Katie's therapists, caregivers, and family, that I will be able to objectively sort out any milestones or changes that may be due to the stem cell transfusion, and that is what this blog is all about!

04/20/16 Katie has been diagnosed with a very rare gene mutation on the gene GRIK2. TGen is who found this gene mutation and put us in touch with a scientist at Northwestern University who is doing further research on Katie, specifically. So awesome!

about Katie

Katie was diagnosed with hypotonia at age 1, which is basically weak muscles, not really a true "diagnosis". We have no idea why she has this, but it delays her in many areas such as crawling, sitting, walking, talking, and fine motor skills. Katie is now 10 years old and she started walking about 4 years ago but still unsteady. Her coordination and balance are something we are constantly working on.
She did wear glasses from ages 2-4 and then her vision improved and she doesn't need them anymore, which is so great! Getting glasses on her was not easy - had to come from behind and put them over her head that way. It's nice not to have to worry about getting the glasses on her any more!
Katie can totally understand what you say, nods her head for "yes", has a few signs (for "more" and "me") but still is not able to talk much at all. Maybe a few words.
Katie is a work in progress!